Posts: 10

Topic: Ups and now downs

Hello,

I've been having a very tough time lately. I do not have anyone in my life that I can talk to about the roller coaster ride of this disease, so here I am venting and looking for support! I spend every moment of free time I have researching my dad's symptoms and options. Over the course of the last few months, I have been pushing my dad to change Doctors (to Dr. Zhu at MGH). He complains all of the time about the treatment he's currently receiving at Dana Farber, but he won't do anything about it. There is only so much I can do myself. He doesn't take much control of his situation (if any), which is very burdensome on me. I know it's not fair to me, but I don't know what else to do. I spend little time focusing on my own life and my own happiness and it's really starting to have a major effect on my well being.

We were so happy after his CT scan mid-Feb which showed a large reduction in the disease in his liver. We even got the okay to hold off on SIRT because he was moving in the right direction. A few days after the scan and last treatment, my dad started to get high fevers and lower abdominal pain, so he decided to skip a treatment. The pain got worse, but he didn't go into the hospital in hopes that it would just clear up on it's own. He went into Dana Farber two weeks later and had to skip another treatment because the pain was so bad. They did a CT scan to find the issue which happened to be colitis. He was immediately placed on antibiotics and is actually feeling much better. That is the good news. The bad news is that he has had aggresive disease progression. There is also a renal lesion that was always referred to as a cyst that has increased in size. There is also growth in some lymph nodes (which could just be due to the colitis, but could also be because of disease). They noted free fluid in the pelvis area and early portal hypertension. All of these things are not good. The problem is that we do not know if some of these things are due to colitis and/or from missing a treatment or if the treatment itself is just not working any longer. I just wish he had gone into the hospital earlier instead of waiting around for the colitis to get out of control. Then he might have only had to miss one treatment and not two.

I left a few message for the radiologist about scheduling an appointment for SIRT. I don't even know if it's still on the table at this point. My dad has an appointment at Dana Farber today to discuss his options. I can't be there, nor am I really up for it anyway. It just blows my mind that you can be doing so good one day and the next it's like everything is going wrong and is out of control. His surgery back in March of last year was so successful. It was a miracle at that point and we truly believed that he was on his way into remission. I feel so cheated. There's really no other way of putting it. I'm praying like crazy and looking for all options. I even reached out to NIH about the clinical trial of TIL. Just feel sad, lost, alone and scared, but trying to push through and know that there are a lot of ups and downs.

Daughter and biggest supporter of the strongest Dad on earth! "Attitude is a little thing that makes a big difference." ~Winston Churchill"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes." ~Hugh Downs

Re: Ups and now downs

Dear Nikki, I am so sorry about all you posted. Sounds like Dad has a mind of his own and that always makes the job of Caretaker harder. Sometimes there comes a time in our lives when we have to do a role reversal with our parents and it is a very hard thing to do but many times it helps. Perhaps you need to sit down face to face and tell him how hard this is for you and you need his cooperation. I would also push him to seek another opinion. I have been fighting colitis now for 3 years and have never heard of it being treated with an antibiotic though it could be. Also a colonoscopy is really needed to diagnose colitis. Believe me I have had my share. The longer colitis is not treated properly the worse it gets. Last but not least, I feel you should call your own Doctor and ask for a very mild antidepressant to help get you through. I had never taken anything like that in my life but all of a sudden I couldn't stop crying and went on Lexapro 10mg a day and what a difference and I have had no side effects. Come here as often as you want we are all here for you.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Ups and now downs

Nikki, you are an amazing daughter. I always tell everyone, that I had the easy part of this nightmare cancer, all I had to do was be sick. My husband, daughter and sisters had the hard part, they had to take care of me and then continue there life like normal. My husband had to run a business and Cates had to go back to school all while making sure I got to chemo, doctor appointments, never alone when hospitalized, never left in the house to long alone, and after the second transplant we added diaper changing, feeding tube, drains.... and yet all I did was be sick, so much easier than what you have to do as a daughter who loves her dad.Lots of prayers and HOPE for answers and peace.Cathy

Re: Ups and now downs

Hello Nikki,

I just posted on the Cabonzantinib thread. My mom was in the hospital 5 years ago for a major flare up of colitis/crohn's disease. The doctor's couldn't agree which it was. I think in the end they felt it was crohn's. But she nearly died it was so severe and was admitted to MGH and was there for 3 months - almost unheard of! She's been on everything from Remicade to Humira for the crohn's and ironically the thing that kept it under control appears to the chemo she was on for the bile duct cancer. Well the chemo stopped being effective for the cancer so they stopped it the end of December and here we are 2 months later with a major flare-up of the crohn's again. Dr. Zhu won't put her back on the trial medicine until the crohn's is under control an the GI doctor doesn't have any solutions. It is awful as she is weak, miserable and stuck in limbo. Sadly, I think she is praying that she'll fall asleep and won't wake up. It is so hard to see.

When my mom was so sick in 2008 and 2009, my sister and I urged her to seek second opinions but my mom was stubborn and is a loyal MGH patient. So I think we have to respect their decision even if it isn't what we would have chosen or what we think is best for them. Good luck to your dad and make sure you take care of yourself. Maybe a spa day is in order for you!

Re: Ups and now downs

Dear Nikki,

Being the caregiver can be so hard and it can feel like the loneliest place in the world. There are no easy answers and sometimes it takes all your strength just to get from day to day. At times like that that's all I did, got from day to day and tapped in her for all the support I could get.

Re: Ups and now downs

Thank you all for reaching out to me! It means so much to know that I can always turn here for support and love

Lainy - I guess his colitis is a bacterial kind. The antibiotics are working as he hasn't had any pain in about a week. The antibiotics make him so nauseous that he can't get any food down. Are there any other ways to prevent colitis flare ups?! Tomorrow they are doing a MRI to see if a tumor is causing some sort of blockage of his colon which would result to the bacterial colitis. His intervential radiologist wanted an endoscopy to determine this, so I'm not sure why his oncologist ordered a MRI. Very frustating. His radiologist does not think this is the case. We need the colitis to clear up so he can continue treatment and get SIRT. My aunt is up here and has been helping out which is a huge relief. She is taking him to his MRI tomorrow which I am so thankful for, especially now that I am coming down with something which I hope is just a cold!

Kathy - thank you for your dear words. I think the hardest part about being the caretaker is that we forget to take care of ourselves. It is very hard to go through the motions of normal everyday life when someone you love is so sick. Your family sounds like an amazing bunch!

Caroline - your mom's story is so similar to my dad's. This is his first round with colitis, but he has missed two treatments because of it. He says the colitis symptoms are worse the the cancer symptoms. Go figure. I guess colitis CAN be that bad. I have been so nervous asking myself, can he really be in THIS much pain from colitis? Is your mom going back on the trial medication even if it's not working? What are her next steps? I pretty much have my dad convinced to transfer to Dr. Zhu. I looked up that clinical trial he mentioned to you, Nivolumab. I'm not sure if you've done much research on it, but it's considered a break through drug by the FDA because of it's huge success with melanoma. It sounds very promising - let's just hope it has the same results for CC! It's definately not off the table for us.

Clare - I agree. Nothing is easy. Not a single part of it. Sometimes I have to muster up energy just to call his oncologist. The lonely part is the hardest. It's not a lonely as you don't have anyone to talk to - it's a lonely in that no one understands the medical details like you do, so you don't have anyone to lean on for advice. My dad doesn't even know what I know about the disease and the treatment options/clinical trials, so I am left all alone to make these difficult decisions for him. It's not an easy place to be and it's a huge weight on my shoulders especially at only 33 years old. I have to stay strong - it's the only option!

Daughter and biggest supporter of the strongest Dad on earth! "Attitude is a little thing that makes a big difference." ~Winston Churchill"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes." ~Hugh Downs

Re: Ups and now downs

Nikki, lets see if I can answer some of your Colitis questions. It is a chronic disease in that it can keep returning, I have yet to go into remission. Mine is very bad but fortunately I have not had pain. I have been on pills, Humira and now Remicade which doesn't seem to be working. Time for some potty talk... does Dad have Diarrhea? Blood and mucus in stools? Urgency to go? Those are the 4 big signs. As I said a Colonoscopy is the best way for Diagnosis. A few weeks ago when they thought my own rare Cancer returned they did an Enteroscopy which goes further down than the Endoscopy and perhaps that is what they want to do to Dad. Luckily my cancer did NOT return. With all this said an MRI should show blockage. I have even had a Colonoscopy and Endoscopy at the same time, great way to get it all done in one sitting so to speak! I hope they can find the problem as its time for some better news!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Ups and now downs

Hi Nikki,

I really do relate to where you are. I was 39 when my sister was ill. I am a nurse and whilst that put me at an advantage I guess in having some medical knowledge, it just made the burden of responsibility harder. I too knew more about my sisters disease progression before anyone else - partly because I worked it out but partly because her doctor was very honest with me. Looking back I was the driver for some very hard decisions that I wish the doctors has taken the lead on. Be involved - absolutely - but let the doctors guide you and don't be placed in situations making decisions you are uncomfortable with without medical support. Xx

Re: Ups and now downs

Nikki,

Good luck to your dad. My mom is having a real tough time with the colitis/crohn's. She has a scope scheduled for next week and until then, the cancer treatment is on hold. She has said many times living with crohn's is worse than the cancer. She has been relatively symptom free from the bile duct cancer since diagnosis, 3.5 years ago.

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